Surgery and Treatment Information

Cleft Q&A
A page designed for new parents.

Cleft Teams
Learn about the team concept and find a team and other resources in your area.

Lactation
Will you be able to breastfeed your baby with cleft lip and/or palate?

Learn More
Audiology, ENT, speech/language, genetics, secondary surgery and more.  Access documents written by medical professionals.
Support, Referral and Education     (International)

AmeriFace  (cleftAdvocate is a program of AmeriFace)
PO Box 751112
Las Vegas, NV 89136-1112
Phone:  (888) 486-1209 (toll-free), Fax:  (702) 341-5351
info@ameriface.org

Children's Craniofacial Association
13140 Coit Road, Suite 307
Dallas, TX 75240
Phone:  (800) 535-3643 or (214) 570-9099
contactCCA@ccakids.com

FACES: The National Craniofacial Association
P. O. Box 11082
Chattanooga, TN 37401
Phone:  (800) 332-2373
faces@mindspring.com

American Cleft Palate-Craniofacial Association (ACPA)
1504 East Franklin St., Suite 102
Chapel Hill, NC 27514-2820
Phone:  (919) 933-9044
Fax:  (919) 933-9604

The Cleft Palate Foundation (CPF)
Stacy Keach, Honorary Chairman
CLEFTLINE: 1-800-24-CLEFT (24 hours, toll free)

Let's Face It
University of Michigan
School of Dentistry / Dentistry Library
1011 N. University
Ann Arbor, MI 48109-1078
faceit@umich.edu

The Moebius Syndrome Foundation
PO Box 147
Pilot Grove, MO 65276
Phone:  (660) 834-3406
Vicki McCarrell

The Jorge Posada Foundation for Craniosynostosis
P.O. Box 2038
New York, NY 10159-2038
Phone:  (866) 823-8005
foundation@jorgeposada.com
Arm Restraints

MEDI-KID
P.O. Box 5398
Hemet, CA 92544
Phone:  (909) 925-8800 or (888) 463-3543
Fax:  (909) 925-0686
melinda@medi-kid.com

Snugglewraps
Also distributes other cleft-related items
2156 Medway Drive
Charleston, SC 29412
Phone:  (843) 762-6769
Fax:  (843) 762-2380
Sales and Service
TheAbleCo@aol.com

Posey Company
5635 Peck Rd.
Arcadia, CA 91006-0020
Phone:  1-800-44-POSEY (447-6739)
Fax:  1-800-767-3933
See Freedom Splints and Elbow Splints
Ear Plugs/Water Protection/Misc.

Canica Design - DynaCleft
Tapes for pre- and post-surgical taping and NAM use
36 Mill Street
Almonte, Ontario
K0A 1A0, Canada
Phone:  (613) 256-0350 or (800) 705-8312
sales@canica.com

JACO Enterprises Earband-It
PO Box 22084
Phoenix AZ 85028
Phone:  (602)  942-1191 or (800) 678-0078
Fax:  (602) 482-2216
info@earband-it.com

Aqua-Earbands
4 Vata Court, Unit 15
Aurora, Ontario, Canada L4G 4B6
Phone:  (905) 727-9135
Toll-free in North America:  1-800-361-0072
Fax:  (905) 727-0964
allstar@aci.on.ca

Bermuda Babies Drool Bandanas
5431 Dellview Street
Chilliwack, BC, Canada V2R 3Y9
Phone:  (604) 657-2951
orders@bermudababies.com

The WubbanNub™ Infant Pacifier
Children's Medical Ventures (Dog and Duck)

The WubbanNub™ Infant Pacifier
Baby Planet Boutique (Horse, Duck, Frog)

The Tucker Sling®
Infant-positioning system for babies with reflux
or requiring post-op elevation.
P. O. Box 641117
Kenner, LA 70064
Phone:  (800) 780-7479 or (504) 464-7479
Fax: (504) 464-7480
info@tuckerdesigns.com

Beyond Play
Facial and oral massager for children with oral defensiveness
1442A Walnut Street, #52
Berkeley, CA 94709
Phone:  1-877-428-1244 (toll free)
custserv@beyondplay.com

Dry Pro
Cast, prosthesis, PICC line water protection
349 Military Cutoff Road
Wilmington, NC 28405
Phone: (910) 791-0009
Fax: (910) 791-4479
Toll Free: (888) 337-9776

Toothette Disposable Swabs
Beyond Play
1442A Walnut Street #52
Berkeley, CA 94709
Phone:  1-877-428-1244 (8am-4pm, Pacific Time, M-F)
Fax:  1-877-218-8441 (toll free)
custserv@beyondplay.com
Financial/Surgical Resources

Shriner's Hospitals For Children
International Shrine Headquarters
2900 Rocky Point Dr.
Tampa, FL 33607-1460
Phone:  (813) 281-0300

Fresh Start Surgical Gifts
2011 Palomar Airport Rd, Suite 206
Carlsbad, CA 92011
Phone:  (760) 944-7774
Toll-Free: (888) 551-1003
Fax:  (760) 944-1729

Thousand Smiles Foundation
P.O. Box 606
Bonita, CA 91908-0606
Phone:  (619) 470-2885
Fax:  (619) 267-4553
information@thousandsmiles.org

Healing the Children
National Office
P.O.Box 9065
Spokane,WA 99209-9065
Phone:  (509) 327-4281
Fax:  (509) 327-4284
respond@healingthechildren.org
Click here for regional United States chapters

Share A Smile Foundation
4572 Turnberry Ct.
Plano, TX 75024
Phone:  (972) 208-8813 or (972) 567-8191
Holly Stock
Founder & Managing Director
Funding for treatment of children with vascular malformations

Children's Corrective Surgery Society
338 West 3rd Ave.
Escondido, CA 92025
Phone:  (760) 735-9065
Fax:  (760) 735-2977

World Craniofacial Foundation
7777 Forest Lane, Suite C-621
P.O. Box 515838
Dallas, TX 75251-5838
Phone:  (972) 566-6669
or (800) 533-3315
Fax:   (972) 566-3850
worldcf@worldnet.att.net

The NewFace Foundation, Inc.
Brookwood Medical Plaza, Suite 372
513 Brookwood Boulevard
Birmingham, AL 35209
Phone:  (205) 879-6665
Fax:  (205) 879-3873
phpp@aol.com

Operation Rainbow
4200 Park Blvd PMB 157
Oakland, CA 94602
Phone: (510) 273 2485
info@operationrainbow.org

Operation Restore Hope
PO Box 1185
Double Bay, NSW 1360
Sydney, Australia
Phone:  +61 (2) 9362 7480
Fax:  +61 (2) 9328 6036
info@operationrestorehope.org

The Smile Train
245 -  5th Avenue, Suite 2201
New York, NY 10016
Phone:  (877) KIDSMILE (543-7645)
or (212) 689-9199
Fax:  (212) 689-9299
info@smiletrain.org

Operation Smile
6435 Tidewater Drive
Norfolk, VA 23509
Phone:  (757) 321-7645
Fax:  (757) 321-7660

Interplast
300-B Pioneer Way
Mountain View, CA 94041-1506
Phone:  (650) 962-0123 or
1-888-INPLAST (1-888-467-5278)
Fax:  (650) 962-1619
IPNews@interplast.org
Travel Resources

Air Charity Network™ (ACN)
National charitable aviation network includes Angel Flight regions as well as Mercy Medical Airlift
410 1st Ave. NW
Rochester, MN 55901
To request assistance:  (877) 621-7177 or e-mail

Miracle Flights for Kids®
2756 N. Green Valley Parkway #115
Green Valley, NV 89014-2120
Phone:  (800) FLY-1711
Phone:  (702) 261-0494
Fax:  (702) 261-0497

PatientTravel.org
(Formerly the National Patient Air Transport HELPLINE)

Lodging/Accommodation Resources

The National Association of Hospital Hospitality Houses
Lodging and support services
Hospitality Hotline  (800) 542-9730
Daily 9 a.m. to 5 p.m. EST

Ronald McDonald House Charities
Find a house using this on-line tool

Fisher House
Military Resource includes lodging and support services
(888) 294-8560
FisherHouse@aol.com
Insurance Resources

State Insurance Commissions
Check our state pages

COBRA Tips
From insure.com

Insure Kids Now!
For children with no health insurance who don't qualify for Medicaid.  Some states also insure families.  Links to programs also available on our state pages.

State Medicaid Programs
Check our state pages
QuickLinks
Feeding and Nutrition

Cleft Palate Nursers/Feeding Alternatives

Sippy Cups

The Controversial Issue of Breastfeeding
Cleft-affected Infants by Jacalyn Hudson Miller
Downloadable Soon!  A cleftAdvocate on-line exclusive!

Mead Johnson Cleft Palate Nurser
Order on-line or call (800) 222-9123
Pricing as of December 2006 - $19.00/6 bottles, includes shipping; Case of 72 nursers - $144.00, includes shipping

SpecialNeeds™ and Mini-SpecialNeeds™
Formerly known as the Haberman Feeder
(See other distributors below)
To order direct from Medela
Phone:  (800) 435-8316
(Approximately $22.50 per bottle)

Find a Local Medela Dealer
SpecialNeeds™ and Mini-SpecialNeeds™ Feeders
and Breast Pumps)

Medela International Distributors (Outside USA)

Children's Medical Ventures
Specialty feeding supplies, including Pigeon feeders
275 Longwater Drive
Norwell, MA  02061
Phone (888) 766-8443
Outside the USA (724) 387-4000

Playtex® VentAire Bottle
Available at your local store.  Parents report using this bottle with the Pigeon nipple.
Ask a parent at  FTFC!

Dr. Brown's Bottles
Parents report using this bottle with the Pigeon nipple
(Dr. Brown's Bottles are also now available at Walmart)
Handi-Craft Company
4433 Fyler Avenue
St. Louis, Missouri 63116
Phone:  1-800-778-9001
info@handi-craft.com

Pigeon Cleft Palate Nurser
Parents recommend P915 nipple and A711 bottle
4350 Steeles Avenue East, Unit A13
Box 98 Markham, Ontario Canada L3R 9V4
To order, call (866) 886-3811 or (fax) 1-866-886-3812
Local : (905)-513-7265, Fax: (905)-513-7268
daniel@galtak.com

Ross Educational Services Department
Cleft palate nurser, Item #00875x
Parents reports using this bottle with Ross Preemie Nipple
Order direct from Ross, as this item is noted on their website.  Call toll-free (800) 986-8503 Monday-Friday, 8:30 AM - 5:00 PM, EST.  Price as of September 2005 is $1.75 per bottle, a minimum order of 3 bottles required.

Ross Preemie Nipple
Item # 54078
Order at www.rosstore.com or call (800) 258-7677 to place an order.  Pricing as of January 2006 - $42.00/case of 48

Similac Orthodontic Nipples #54100
Order at www.rosstore.com or call
Ross at 1-800- FORMULA (1-800-367-6852)
Pricing as of April 2006 - $52.00/case of 48
Includes shipping

Zip-N-Squeeze
Soft-Sipp and Zip-N-Squeeze Post-Operative Feeders
Susan Beaudette, RN
PO Box 575
Yorba Linda, CA 92885-0575
Phone/Fax (714) 997-7146
zipnsqueeze@earthlink.net

Maternal Concepts
130 N. Public Street
Elmwood, Wisconsin 54740
United States
Phone:  (800) 310-5817
Fax:  (715) 639-2739
sales@maternalconcepts.com
SuckleCup and SuppleMate offer post-op feeding options

Self Expressions
SpecialNeeds™ and Mini-SpecialNeeds™ Feeders/Parts
1 Sherwood Dr
Shalimar, FL, 32579
Phone:  Toll Free (877) 463-3352
From Northwest Florida, call (850) 651-4500
sales@selfexpressions.com

Mothering From The Heart
Stocks SpecialNeeds™ and Mini-SpecialNeeds™ Feeders
Phone:  (256) 528-7953
Marsha@MotheringfromtheHeart.com

Mothering With Ease
Stocks SpecialNeeds™ and Mini-SpecialNeeds™ Feeders as well as supplemental nursing systems (SNS)
18 Merrick Drive
Spring Valley, NY 10977
Phone:  (845) 356-9887
motheringwithease@yahoo

Smiles All Around
Munchkin Healthflow
Tri-Flow Bottle/Nipple System
25030 Ave Tibbitts, Unit J
Valencia, CA 91355
Phone:  (661) 492-2455
Fax:  (661) 775-0302
sales@smiles-all-around.com

Tender Care 4 Kids
Various feeding supplies, including the  SpecialNeeds™ and Mini-SpecialNeeds™ Feeders and cleft palate nipples
6103 Tupelo Lane
Frisco, TX 75035
Phone (214) 676-6662
Fax (561) 258-8521

Enfamil Human Milk FortifierRead our disclaimer
Order on-line or call (800) 222-9123
Pricing as of September 2005 - $110.00/100 packets

Similac Human Milk FortifierRead our disclaimer
Order at www.rosstore.com or call (800) 258-7677 to place an order.  Pricing as of January 2006 - $42.00/case of 48

ScandicalRead our disclaimer
Taste-free calorie booster; consult your physician.
Axcan Pharma Inc. - United States
22 Inverness Center Parkway
Birmingham, AL 35242 USA
Phone: (205) 991-8085
Fax: (205) 991-8176

Thick-It®Read our disclaimer
Instant food thickener; consult your physician.
Great Lakes Regional Sales Manager
Phone: (614) 792-8033
Fax: (614) 792-7733
t_polito@precisionfoods.com

State WIC Programs
Check our state pages for links to your county office.  WIC provides supplemental foods (including formula)
and nutrition education.

La Leche League
Information on breastfeeding infants with clefts
Submit a Link

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This cleftAdvocate page was last updated June 5, 2008
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